Unsettled, Uncertain and Striving to Understand: Toward an Understanding of the Situation of Persons with Suspected Dementia

Abstract

The main purpose of this study was to understand the part played by clinical diagnosis in relation to persons with suspected dementia. Interviews were held with eight persons who had been evaluated clinically because of suspected dementia. A phenomenological-hermeneutic analysis inspired by Ricoeur's philosophy was performed. The findings revealed the overall meaning of "making sense" of early experiences of memory loss in terms of a clinical diagnosis by which participants are provided with a means of interpreting and ascribing some meanings to the changes in themselves. When a meaning cannot be established and the future is unknown, these experiences are found to pose an existential threat that projects into future existence. The study suggests that understanding how an informed diagnosis is comprehended by the client becomes essential when evaluating persons due to suspected dementia.

Living with early‐stage dementia: a review of qualitative studies

“…While all generally explored the experience of living with dementia, some focused on specific aspects, such as the prediagnostic phase (Robinson et al. 1997, Keady & Gilliard 2001), the assessment process (Keady & Gilliard 2002), receiving a diagnosis (Robinson et al. 1998, 2000b, Pratt & Wilkinson 2001), coping and adaptation (Clare 2002, Harris & Durkin 2002, Pearce et al.…”

Disclosing a diagnosis of dementia: a systematic review

“…Although disclosure of a diagnosis of dementia has negative impacts, non-disclosure or the provision of a vague or possible diagnosis was also identified as confusing, upsetting and difficult to interpret (McWilliams, 1998;Robinson et al, 1998;Smith and Beattie, 2001;Pratt and Wilkinson, 2003). Positive impacts of disclosure identified by people with dementia include, an end to uncertainty, confirmation of suspicions and increased understanding of problems (McWilliams, 1998;Robinson et al, 1998;Husband, 1999;Husband, 2000;Smith and Beattie, 2001;Pearce et al, 2002;Pratt and Wilkinson, 2003).…”

“…Positive impacts of disclosure identified by people with dementia include, an end to uncertainty, confirmation of suspicions and increased understanding of problems (McWilliams, 1998;Robinson et al, 1998;Husband, 1999;Husband, 2000;Smith and Beattie, 2001;Pearce et al, 2002;Pratt and Wilkinson, 2003). The importance of a supportive social context in helping people adjust to the diagnosis has been highlighted (Pratt and Wilkinson, 2003).…”

Help Seeking for Personal Concerns About Developing Alzheimer’s Disease

“…It is widely recognized that the process, both complex and inexact, dooms many individuals to suffer in silence for many years before they become part of the formal health care system (Robinson, Ekman, Meleis, Winblad, & Wahlund, 1997;Robinson, Ekman, & Wahlund, 1998). Evidence suggests that subjective memory complaints are often neglected by individuals and their families until symptoms become severe and interfere perceptibly with daily activities (Mundt et al, 2000;Ross et al, 1997).…”

“…Boise et al (1999) studied the delay between symptom recognition and dementia diagnosis and concluded that issues related to the caregiver-ignorance of AD, assumptions that symptoms were normal aging, and not knowing where to go-were important reasons for the delay. But beyond such a discussion of how caregivers affect the decision to seek help (Boise et al, 1999;Douglass & Fox, 1999;Smyth & Milidonis, 1999), early help-seeking behaviors for AD have gone largely unexamined (Robinson et al, 1997(Robinson et al, , 1998.…”